Hi, All - I went down to St. Louis yesterday for my 6-weekly checkup with the Sutent clinical trial and got some good news.   My CAT scan last week shows no new tumors and the existing tumors show no new growth.  I started on my 7th course of the drug yesterday and they have some new ideas to try with the side effects.

 

I found out a little more about the study as a whole.  There are only 50 of us in it nationwide.  (I had thought there were 50 of us in the St. Louis location.)  I'm one of the few men and I'm the youngest person in the study.  Most of us have shown good results.

 

The researchers are preparing a paper on the current phase of the study.  It will probably be presented this summer.  If it's accepted, the study may go into new larger phase.  I have hopes if this happens that my oncologist in Lincoln might be able to be part of it, or failing that, maybe a practice in Omaha will take part.

 

Thanks for your continuing prayers and support!

 

John

Hi, All  - I went down to St. Louis Monday and saw Dr. Needles.  Normally, I would be starting the next cycle of Sutent today, November 21.  Dr. Needles decided he wanted me to wait a week and try to get my feet healed up more.  I'll start my next cycle on Wednesday, November 28.  My next appointment with Dr. Needles is January 9.

Dr. Carlson, I have an appointment with you on December 4.  Normally, that would be 2 weeks into the drug cycle, but it's only 1 week into the revised schedule.  Please let me know if you want me to reschedule this appointment.

Hope you all have a Happy Thanksgiving!

John

Good News!

Hi, All - I went to St. Louis yesterday to see my doctors in the clinical trial I'm taking part in and got some good news:  There are no new tumors and all existing tumors are stable.  The best part is there was some shrinkage in the largest tumor in my lung.  They had some new ideas that might help mitigate some of theside effects of the drug, which I have to admit hit me pretty hard this last cycle.

I was all excited because I'd been seeing dark whiskers in my beard and mustache the last couple weeks, but they said that probably wouldn't continue while I'm on the drug.  Oh, well, men with white beards and hair are distinguished and universally revered for their wisdom and sex appeal, aren't they?  {I wish!  }

I'll continue with the cycle of 4 weeks on the drug and 2 weeks off, then back to St. Louis for a check-up and to get the next cycle of drugs.

I haven't checked email for a few days and see there are quite a few from some of you.  I'll try to get back to those of you I owe a reply to in the next couple days.

Thanks for your continued prayers and support.

John

Latest St. Louis Trip

Hi, All - saw the oncologist in St. Louis yesterday.  Not a whole lot happened - poked, prodded, asked embarrassingly personal questions.  They said things look good, side effects aren't too bad, blood chemistry is good.  They're still surprised that I'm not feeling more pain or breathing discomfort, but, all things considered, I'm really not.  

I'll have another CAT scan here in Lincoln in about 5 weeks.  That'll show if there's any shrinkage or new growth, so keep your fingers crossed!

Thanks for all your prayers and support!

Talk to you later.

John

Update

Hi, All - just wanted to let you know that I got good news last week when I visited the clinical trial site.  After only 2 courses of the drug Sunitinib, the 2 largest tumors in my lungs have shrunk slightly and there are no new tumors!  The doctors are very excited and (needless to say) so am I!  It sure makes it easier to put up with the side effects when you know it's doing you some good.

This is a definite success.  For purposes of this clinical trial, success is no growth, so the fact that there is shrinkage is gravy.

I've started the 3rd course of the drug.  After 12 weeks, I'll have another CAT scan and we'll see how things are going then.

Thanks for all your prayers and support!

John 

Hi, All - I'm back from seeing my oncologist in St. Louis for the trial of Sunitinib.  It went pretty well.  He's pleased with my reaction - side effects aren't too bad, white blood cells responded well, still a bit anemic but not too bad, blood pressure is OK.  I've been approved to go on with the next course of treatment, so I'll be taking Sunitinib for the next 4 weeks, then off for 2 weeks.  I'll go down for another check-up in July.  I'm having a little more trouble with nausea and fatigue this time, but nothing I can't handle.

I'll have a CAT scan after this 4 weeks course so we can see how the tumors are reacting to the drug.  If they're getting smaller or staying the same, I'll get to continue in the clinical trial.  I'd prefer that they get smaller, but not getting any larger or spreading is definitely a good thing!

In addition to being tested on patients like me who have metastasized thyroid cancer, Sunitinib is being tested on liver cancer and had some good results on that, so that's a hopeful sign.

All four of us went down this time.  We got to see the Cards win and did some touristy-type things like go up in the Arch and visit the St. Louis Zoo.   We got to spend some time with Sara's Aunt Rosemary as well.  She took the boys to the Magic House and they had a great time there.  (Rosemary is a brave woman to take on 2 redheads by herself!)  We went through Hannibal on the way home and saw some Mark Twain sites.  Visiting the cave he described in Tom Sawyer was fun.  Matthew had lots of theories about bats, spiders, and "cave geckos" that he shared in great detail with the guide.  (We should have tipped the guy - wish I'd thought of that earlier.)

Thanks for your continued prayers and good thoughts!

John